The worst thing about turning 40 wasn’t the birthday itself. It wasn’t the psychological adjustment of no longer being able to refer to myself as “a thirtysomething,” because a) I never did that, and b) I still regularly get carded for beer. It wasn’t even the feeling of not really wanting to celebrate but feeling like I had to celebrate, because milestones. The worst thing was knowing that I wasn’t going to get a phone call from my mother. She wasn’t dead, but she also hadn’t remembered a birthday in several years. As far as I’m concerned, the moment your parents forget your birthday–not for an hour or two, not even for the majority of a day, Sixteen Candles–style, but because it simply does not occur to them that there is anything to remember–that is the moment you become an orphan.
In the place of birthday wishes, I got New Year’s wishes. First on Christmas, and then New Year’s Day, and then, gradually, on almost every other holiday in 2013, long voicemail messages about how she hoped this year would be wonderful for all of us, how she looked forward to seeing what the year brought. Martin Luther King Day, Valentine’s Day, Passover, and July 4th all brought identical messages, ending with, “I think it’s going to be a wonderful year.”
Maybe this was a positive development. She didn’t remember my birthday, or her own, or my brothers’, or those of her grandkids, but she also didn’t remember the anniversary of her husband’s death, or their wedding anniversary, or any of the markers that served primarily as reminders of loss. All that was left were days where banks and schools and citizens agree to make things a little different. Where there were decorations in the vast dining room of the assisted-living facility, when doctors and aides wore festive pins and red sweaters, when there was some kind of cake for dessert. Each of these, whatever they mean to others, became for her the harbingers of a fresh start, a happier new year.
For the onlooker, Alzheimer’s is everything you’ve heard it is. It’s the pure heartbreak of watching memories evaporate from your loved one until they’re simply a blank face looking expectantly at you for input. It’s feeling acutely on their behalf the loss of dignity that comes when one can no longer bathe or dress themelves, when anger is inspired by elevator buttons and more than one key on a ring. It’s like grabbing for a slender rope connecting you to the past, but instead of hands you have oven mitts and they’re coated with Crisco.
It’s having the same conversations over and over on goldfish time, running in shorter and shorter loops. Most recently, we sit in a Chinese restaurant booth, watching an actual fish tank like it’s CNN.
“Look at that little fish, it’s lost. It’s so sad,” she says, not sounding all that sad.
“He’s sad because he can’t find his mama,” says my son matter-of-factly.
“Well. I am just so happy that we’re all together. I don’t see you enough. When will I see you again?”
“We’re here now, mom. We’re right here.”
“Look at that little fish, how sad. It’s lost.”
My son looks at me for help. I shrug. Stick to this script and we’ll be fine, says the shrug.
Which isn’t to say it’s not funny, sometimes. At the time my mother first started showing signs of dementia, we went on a trip together to Paris, to visit friends we both knew she’d likely never see again. She was processing, in her own way, the idea that her past as a traveler was ending, and she was cranky, on edge, and prone to fearful sleep outbursts that she never remembered the next day. But one morning found her suddenly happy, optimistic, ready to explore as much of the city as she could with her increasingly arthritic shuffle and the cane she rarely admitted to needing. Spooning another layer of raspberry preserves on her toast, she sighed and exclaimed, “It’s like I can feel the jam running through my veins!” These days, it’s a phrase my husband and I repeat whenever we feel revived after a long night or punishing workday. We want both the jam power and the delight that comes from its unexpected arrival.
But more often, the dementia stirs panic in both of us. One day, I open her dresser drawer, looking for a t-shirt to replace the wool sweater she’s wearing in 85-degree heat, and am confronted with layers of paper towels between which are carefully laid a few pairs of cotton underpants worn sheer from a decade of use. Diana, her aide, shakes her head at me. “She won’t wear the panties you send. She thinks they will give her an infection. Every night, she’s in there”—she motions to the miniscule kitchen area—“with those towels, with the panties.” She mimes my mother’s stooped-over frame and pretends to fuss with an imaginary drawer. “She gets angry if I touch them.”
This is classic Alzheimer’s behavior. When you can control so very little, what you can control becomes magnified in importance. Panties become bank accounts; routines become careers. Living in the moment is about all you can do, but that doesn’t stop you from becoming agitated about what happens next, and what might prevent what happens next from happening.
“They told me you were at the hospital,” my mother says breathlessly, hugging me, the day after we had Chinese food by the fish tank. “They told me you fell, that you had a broken leg.”
“Who told you I fell?” I ask.
“Oh,” she says, with a dismissive hand flip, “You know. There’s so many people. I can’t remember. But I’m so glad. I was so worried.”
This is what passes for love now. I disappear from her life when I’m not in front of her, or on the other end of a phone call that I place. My next birthday is a few weeks from now; if I call her that day and remind her, she might be able to pull out a memory like a magician’s scarf, even if it’s something that happened to her, or one of my siblings, rather than me. She won’t feel any regret in having forgotten; I won’t take it personally–at this point, it’s not. Together, perhaps we can reverse this orphaning. Perhaps it will be a wonderful year.
Tags: alzheimer’s, andi zeisler, family, health, moms
A little over a year ago, we lost my grandfather to dementia and heart problems. I very much identify with the author on this piece, and I hope this is, indeed, a wonderful year.
Ach. Yes. This is how it went, with my very brave grandmothers, both of whom stayed too long, too long. We shouldn’t have dried them out, but what were we to do? One’s gone now, but the other’s still here, on loop in a body she long since should have left. She’s lovely. Mannered. I miss her sharp, cruel wits so badly.
Thank you for this. I am trying to spend as much time with my grandfather as possible. Luckily, and may it please last, he has very little anxiety and seems to be very much like a baby, just present in the moment most days. I try to keep my face pleasant and passive so he does not know he is repeating the same questions over and over. I am desperate, really, to keep things calm, to try to keep the panic at bay. Wishing a wonderful year for all of us.
Thank you for this piece. Your language makes the loss acute for all of us something almost beautiful (your writing certainly is!)
Thanks for this. This is a nice piece. I’m young but my dementia sufferer is my dad, not my grandparents, and I think people find it hard to wrap their heads around. But this was a reminder that the feelings- the helplessness and panic and the miraculous occasional memory that feels like a victory, the coping mechanisms, they’re the same for everyone.
Andi, thank you for this. I will never forget how I felt the first time my mother sent me a birthday card at the wrong time of year — it was indeed like being emotionally orphaned. I’m so sorry that your mother has this disease.
Andi, thank you for this. I will never forget how I felt the first time my mother sent me a birthday card at the wrong time of year — it was indeed like being emotionally orphaned. I'm so sorry that your mother has this disease.
Very beautifully written. Like so many others, I’m watching my grandmother disappear this same way. My sister recently went to stay with her and help, but ultimately had to leave because my sister’s presence began to confuse and scare my grandmother, who somehow got it into her head that that “those people” had sent my sister to spy on her and sleep with my grandfather. Her decline is so ugly, and so rapid. I fear that the next time I see her she won’t remember who I am at all.
I can’t bear the thought of having my mother go through this in 20 years, or myself in 50. I’ve darkly joked to my fiancé that he can just go ahead and smother me with a pillow if I start to go this way myself. I’m not even sure I’m kidding. My grandmother is so scared and confused all the time, and in her more lucid moments she says “I don’t even feel human. This is no way to live. I know my brain is wrong and I don’t know how to fix it.”
Well put. This is my future (baring some amazing breakthrough that works in more than just mice trials). My grandmother has been “beamed out” a long time ago, speech itself is typically out of reach. It was several years ago when she looked at me, knowing just enough to know I was related but not enough to remember who I was despite the mechanistic repetitions of my mother.
My memory sucks already, and my mother is starting to show signs of the disease. She stale dated our wedding check by 6 years. My fabulous other half is walking in with open eyes and it kills me.
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